Children with sickle cell anemia often don’t receive antibiotics to prevent deadly infections

Children with sickle cell disease often do not get the daily dose of antibiotics that they need to protect them from deadly infections, according to a study led by researchers at the University of Washington.

The study of children covered by Medicaid insurance in two states found that pharmacies only provided the children with a mean of 148 days a year of antibiotics, or roughly 41 percent of the year. It has long been recommended that children with sickle cell anemia take antibiotics every day for the first five years of life; so the study shows that children were at risk of developing a serious infection for nearly 60 percent of the year. But that was the mean score — one out of 10 children got no antibiotics at all.

“This is a very real problem. Taking antibiotics is very important for these children; taking antibiotics protects them from catching bad infections,” says Dr. Colin M. Sox, lead author of the report published the Aug. 27 issue of the Journal of the American Medical Association. Sox is a pediatrician and a Robert Wood Johnson clinical scholar at the University of Washington.

Other authors of the paper include Dr. Dimitri Christakis, associate professor of pediatrics at the UW and co-director of the UW Child Health Institute; Dr. Thomas Koepsell, UW professor of epidemiology; Dr. David L. DiGiuseppe, research scientist at the Child Health Institute, and Dr. William O. Cooper, associate professor of pediatrics at Vanderbilt University in Nashville, Tenn.

The authors speculate that there are many reasons that children are not getting the antibiotics they need. The barrier does not seem to be financial; under Medicaid in these states, only a small percentage of the families needed to make any co-pay for prescriptions, and there was no statistical difference between the amount of antibiotics provided to families that needed to make a co-pay and those that did not.

“One possibility is that doctors are not writing the prescriptions. Another possibility is that doctors are writing the prescriptions, but the families are not filling them,” Sox said. “Probably both factors contribute to what we found.”

Among the complicating factors is that in both states, you can only pick up enough antibiotics to cover about 30 days at a time. Providing enough medication to protect a child from infections for a year requires repeated requests for refills and visits to a pharmacy.

“Many insurance groups, including Medicaid, place limits on the length of prescriptions. While this makes sense for some medication, it may not be best for medication that is needed for everyday use to prevent infections,” Sox said.

Perhaps because of their illness, children with sickle cell anemia visited a doctor a mean of 13 times a year; those visits could provide an opportunity for health-care professionals to check and see if the family is getting their prescriptions filled and the child taking the antibiotic, Sox said.

Sox got the idea for the study during his experience as a pediatric resident at the University of California, San Francisco, where he took care of children with sickle cell disease who were hospitalized with preventable infections. He wondered why the children had not taken their prophylactic antibiotics, as the recommendation for daily antibiotics had been around since the late 1980s. “These children can become very sick, and sometimes die,” he said.

The study included 261 children with a mean age of 1.4 years in Washington and Tennessee. The actual amount of antibiotics dispensed varied among the group: more than 10 percent of the children received no antibiotics, while 21.5 percent received enough antibiotics for 270 days of medication or more.

Sickle-cell disease, also called sickle-cell anemia, primarily affects people of African descent, but also occurs in some people of Mediterranean, Middle Eastern and East Indian origin. The disease is caused by abnormalities of the genes of hemoglobin, the oxygen-carrying protein in red blood cells.

Among blacks, one newborn in 375 develops sickle-cell disease. Some 60,000 African-Americans have the disease, and some 2.5 million of the country’s 30 million blacks are carriers of the gene. Children with two parents who carry the gene for the disease can develop sickle-cell disease. In people with the disease, the affected hemoglobin crystallizes and forms a rod shape, causing red blood cells to distort into sickle-like shapes. The cells tend to clog capillary blood vessels and impede blood flow, producing pain in bones, muscles and the abdomen, and leading to shortness of breath and damage to internal organs. There is a serious risk of infection among these children, and taking daily antibiotics reduces the risk of infection by 84 percent, according to a major study published in 1986.